Update from Omaha (permanently)!

Hi everyone,
I am sorry this update is so delayed. It has been a whirlwind emotionally and physically.

We arrived in Omaha for our doctor's appointments Thursday evening (October 25th). My mom came with the kids and I so she could help out taking care of them while we were with the doctors. Brad was already in Omaha since he had been working there all week. We had a reservation to stay at the Rainbow House which is for families with children at the Children's Hospital. Our baby is not technically there yet but they said it was not uncommon to have families like us stay when we came to town for appointments at the hospital.

We met with the perinatologist first. He was great. He was knowledgable on the subject and reassuring. He did not push an amniocentesis and never mentioned terminating, like the doctor at KU Med did several times. Brad and I were both shocked to see that Livvy's entire stomach was now, not only in her chest cavity but was side-by-side with her heart. Her heart is now pushed all the way to the right. It was such a dramatic change from the appointment less than a week earlier. Dr. L. was also concerned about her heart functioning. He said it did not look as "dynamic" as he would expect. He said he wanted us to see the fetal cardiologist but that it might be when we returned to see him in 2 weeks, as he was hard to get into at times. He also talked about the possibility of having to take her early if her heart was showing signs of problems as we progressed.

We left there quietly, just looking at each other. She looks so sweet and 'normal' but has so many problems. We were heading to meet with our neonatologist when Dr. L's office called and said that the fetal cardiologist would see us that day at 2pm. It was great to know we would get into him so soon.

The neonatoloigst was also wonderful. Dr. A is very experienced in CDH. He was very optimistic and reassuring to us. I told him how startled we were to see her stomach beside her heart now. He told us not to worry too much about that. He was straight forward with us about their success rate. Overall, the babies they do lose with CDH had other serious problems, chromosonal or otherwise. Another baby was too premature and was not able to be put on ECMO and other attempts failed her lung functioning. Although it is always hard to hear of a child loss it was reassuring since Livvy did not appear to have any other major problems, although we had yet to meet with the cardiologist. Dr. A talked to us about the team approach and how all our doctor will work together. We knew he was dedicated to giving us the best care and he even came in on his day off to meet with us that Friday.

Following our time with Dr. A we were given a tour of the NICU. It was hard but also comforting to see the measures that will be take for our little girl. The charge nurse was so nice and introduced us to the other charge nurse who will be on Livvy's floor when she arrives.

So, we went back to the Rainbow House, checked out and headed to meet the lady with the house we were going to rent. The house was perfect with a decorated girls room, boys room and a nursery room space that was attached to the master bedroom. It would have been perfect for Aria, Miles and Livvy. When I finished looking at the house the lady told us that they had an offer from Google to rent the house for some execs coming to town and although it "was not about money", they were offering to pay more. She had previously mentioned the google people when SHE contacted us from our craigslist ad but said that she would rather rent to us. It was a big blow just prior to us having to return to the hospital to meet with the cardiologist. On our way back to the hospital we called the Rainbow House to see if we could stay another night since we would have to find a home before going back to Wichita. They said that was fine and gave us the same room we had before.

We headed to meet Dr. D, the cardiologist, at Children's Hospital. It was pretty straight forward. The tech did the Ultrasound and sent him the images in his office. He came in and told us that her heart looks good and normal (accept for its position of course). He said he would pass on the info to Dr. L. and tell him that he is "cautiously optimistic" and we will rescan in mid December to make sure everything is still alright. That was the good news we needed following the days events.

I will skip ahead so as not to bore everyone. We had a hard time finding a house and were were all on edge when we decided we had no choice but to head back to Wichita. It was Saturday afternoon and the home prospects were at a dead end. I was driving mom and the kids and Brad was following us in his car. From the moment we left Omaha I had a braxton hicks contraction. Ok, not a big deal. Well, they continued every 3 minutes, almost like clockwork. Every time I got one I looked at the clock. They seemed to be getting longer and a little stronger. While I still considered them to be braxton hicks I was still concerned about the regularity of them. I decided to pull off in Lincoln and walk around somewhere to see if they stopped. They did not and seemed to intensify. I called our perinatologist office and spoke to one of his partners. She said to come back to Omaha. That was the longest car ride of my life. I was so worried knowing that if she came this early she would have little chance, given her condition of making it. I had little personal conversations with her about staying put. It seemed like one long contraction the whole drive back to the hospital. We spent that evening, in the hospital, on the high risk floor waiting for the doctor. They had an emergency delivery so she was delayed. Livvy sounded great on the monitor and my contractions continued although not as regular as before. The doctor eventually performed two tests to determine my chance of labor within two weeks and the length of my cervix. Both tests came back with good results but she stressed that I needed to remain in Omaha for the safety of our baby. This occuring again while in Wichita would have meant a helicopter flight to the hospital in Omaha. She talked a long time about the risks to our baby which we completely agreed with and understood. She went ahead and released us that night and we got back to the room at Rainbow House around 11:30pm where mom was with the kids.

The Rainbow House knew the situation and said we could stay there until we found a home. I really don't know what we would do without them. So,the next morning, Brad and mom headed back to Wichita to get the immediate things we would need like clothes (we only had 2 days worth) and toys and things for the kids. Their home suddenly became a room the size of a hotel room. Brad came back up on Monday so he could get back to work and be there in case something happened with me again. Two of our friends, mom and two of her friends and several other recruited individuals worked during the week to get the rest of our house packed up. I don't know what in the world we would do without everyone.

I had been teaching a class at WSU on Wednesday afternoons and planned on finishing the last four classes online. My advisor and other professors however told me not to add that to my stress and got someone else to cover the remaining four classes. I hated having to do that and that was my greatest stress about not returning to Wichita. My department however made it all easier and they have been very kind.

We continued throughout the week to look for homes and still had no luck. Crissi, my sister-in-law came up from Arkansas for two days to help with the house hunt and the kids. She was a HUGE help. The Rainbow House (while still wonderful) seemed to be getting smaller. The kids were getting stressed, as were we. On Friday I placed another ad on craigslist explaining out situation. The first response I got that afternoon was from a woman whose son had been trying to sell his home for several months. She said he was interested in renting it. She also said that she had never been on craigslist before that day and felt it was meant to be that she found our listing. We met them that night and that following day (this past Saturday) we finalized everything. Our friends, Mark and Mary arrived Sunday afternoon with a Uhaul of all of our stuff (minus the two dogs and cat who are being cared for temporarily by other people).

So, we are in our new home. It is really nice and unpacking is coming along. I am adapting to life in Nebraska, as I have never lived outside of Kansas before. They have many streets where you cannot make left handed turns, the trash service is free through the city and they sell wine on the endcaps in Target. This is all very strange for a Kansas girl.

We have our next appointments on Friday. We will meet with our perinatologist again and then with the surgeon who will perform Livvy's surgery. Following this week we will likely go to weekly appointments. I am so anxious before we meet with the doctors not knowing what we will find out about our little girl. I will update everyone after Friday and I promise it won't be as long this time since we are in our own home now.

I can't thank everyone enough who helped with our sudden transition. Without friends and family to help house hunt, pack our stuff and provide the emotional and moral support we so desperately need right now we would be in a much darker place.

Thank you everyone for your continued support, prayers and concern.

Appointments scheduled in Omaha

As you may see by the title of this blog we did have a name for our little girl. I was going to try to keep it a secret but we call her Liviana or Livvy all the time and it is hard not to refer to her that way. We have had the girl name Liviana since we were pregnant with Miles.

We have our appointments scheduled in Omaha for Friday, October 26th. We will be meeting with the Perinatologist and the Neonatologist. We are also going to be given a tour of the NICU which I'm not sure I am quite prepared for.

Brad has been in Omaha since Saturday working. They had a homeshow this past weekend and he got some excellent leads, one of which he has alread sold. The housing market in Omaha is really bad so people are opting to keep their homes and fix them up rather than trying to sell now. It is making for good business for Andersen Windows.

The poor housing market is also ending up to be an advantage for us. We posted an ad on Craigslist looking for a home to rent. A lady contacted us right away and said they had a home they had been trying to sell but decided to rent out instead. It is beautiful (I have just seen pictures online) and much, much more than we ever could hope for. It also will cost less than our home now. It is in Council Bluffs, Iowa, which is the Iowa border city to Omaha. It is 18 miles to the hospital from the home. I will go see it when I am in town on Friday. We will have a spare bedroom for guests, which we anticipate we will have more of given the circumstances.

I have met several women online who had their CDH babies at Omaha Children's. One of the ladies is there right now with her son who is having some residual difficulties (He is 9 months old). I will probably meet with her this trip up or the next.

I will update more after our appointments on Friday.

Continue to keep us in your thoughts and pray for our Little Liviana.

The Beginning of the Journey

For those who did not know all the details before; Our little girl has Congenital Diaphragmatic Hernia (CDH). This means that her diaphragm did not form all the way and the contents of her abdomen have moved up into her chest cavity. The biggest concern with this serious birth defect is that the abdominal contents shift the heart up and prevent the lung on that side from developing completely. These babies biggest hurdle is not the surgery to repair the diaphragm but the fact that they often have immediate respiratory distress due to the lack of lung development. The reality is that the mortality rate is around 60% with many factors influencing those that survive. No two cases are alike and it is often hard to predict the outcome. We, however are 100% positive that she will be a survivor!

So, we had an appointment yesterday with a specialist in Kansas City. We were told here in Wichita that we would have to deliver her at Children’s Mercy in KC or somewhere else that is equipped to handle this serious issue. We met with the doctor from KU Med. She looked so perfect on ultrasound. She looks so much like Aria did when she was a newborn. It appears that only part of her stomach right now is in her chest cavity. They did not see that anything else was up. Her heart is shifted off to the right. Her lungs looked good to us although lungs are not easy to see on U/S. Her lung-head-ratio will be crucial to predicting her outcomes as we get closer. She did not appear to have any other soft markers for chromosomal abnormalities. There are a few that are sometimes associated with CDH including Trisomy 13, Trisomy 18 and Monosomy X. Trisomy 13 and 18 are fatal disorders. Some of the things they look for are growth retardation (She is measuring big in the 77th percentile), club foot, short nasal bone, arm and leg bone deformations and hand deformations. All of those things looked great. She also does not have a cardiac malformation (the shift off to the right does not count) which is associated with CDH and lowers mortality quite a bit. The doctor seemed to really want us to do an amniocentesis but we opted not to. The test would reveal any chromosomal abnormalities and the outcome would not change our decision making related to our pregnancy or doing all we can for our little girl.

The big issue was the hospital we would be using. We were surprised when he said KU Med, since we had been told by everyone it would be Children’s Mercy. He said that Children’s Mercy does not deliver and transferring these babies is a bad, bad option. One main issue though is that KU Med does not have an ECMO machine (I’ll let you guys look that one up on your own so you don’t have to read from me anymore). Every single thing I read about CDH babies says you MUST deliver somewhere with an ECMO machine. While I understand and partially agree with the doctor’s thought that they are sometimes used too soon when other things may have worked I am not comfortable delivering somewhere that does not have one, in case she would need one as a last resort.

When we left our appointment we were optimistic because of how great our daughter looked and the fact that so far only her stomach was up in her chest cavity. I however had a huge gut feeling that KU Med was not the right place for us to have our daughter. I asked the doctor how many CDH babies they had in the last year (a VERY important question, they should do at least 3 a year) and he said he did not know, he had only been there for 18-20 months (seems like more than a year to me). This doctor is the director of the KU Med Advanced Fetal Medicine Center. He would be the doctor to see the babies with CDH prior to birth. He knows how many they have had and he either avoided the question because it is too few or he avoided the question because the next one was, “what is your survival rate”.

When we got home Brad and I talked about KU Med and Kansas City not being the best option for our little girl. Children’s Mercy while having experience with CDH does not allow deliveries, leaving a baby seriously vulnerable during transfer. Many parents have reported that they could not even talk to their babies because it sent their heart rate into orbit and caused immediate d-stat. A transfer is dangerous.

We had previously discussed Omaha Children’s hospital which has extensive published information on CDH and doctors with many years experience on the issue. I also have met a few women online who had their CDH babies at Omaha Children’s and they sing the praises of the doctors and hospital. They do have an ECMO and they do have delivery on site (The Methodist Hospital is actually tied to the Children’s hospital to allow that). KU Med does not have any published information about CDH that I could find. What I did find was one blog from a mother who lost her baby to CDH in March at KU Med (she lost her during the transfer to Children’s Mercy). She did not have positive things to say about the doctor we met with either.

We have decided, given what is best for our daughter and given the fact that Brad’s company has an office they want him to transfer to in Omaha that it is the best place for our daughter. These babies average 3 months stay (often longer, although it can be shorter) in NICU and we will not leave her in a city with us hours away. We will be near her as a family and we will make sure that Aria and Miles do not feel displaced or in a temporary home without their comforts. Not to mention it would be very expensive to maintain residence in Wichita while paying for stay, food, gas, etc. in another city for that long.

We plan on moving to Omaha very soon, ideally by the end of November when my class is done being taught. They will want to induce me so they can insure the medical team is available when she is born and they will likely do that at or around 38 weeks. There are some risks in late pregnancy with CDH, namely Polyhydraminos, which is excess amniotic fluid. This is caused by the baby not being able to swallow due to compression of the esophagus from the abdominal contents in the chest cavity. I don’t have any problems so far but it often does not show up until later, if it does. It does put me at risk for premature labor if it does occur though and she is better off in the womb than outside of the womb. We will need to be near the place that can care for her immediately and not hours away in case something like that does happen.

I guess I have given everyone a quick cliff note lesson on CDH, which was not my intent. I just wanted everyone to know what was going on. This is a trying time emotionally for all of us. Our kids are our priority in everything we do and we not only want to make sure that our new little girl has the very best care she needs but Aria and Miles can also go through this with as little turmoil as possible. I never imagined the difficulty I would face carrying our little girl knowing the pain she would immediately face and the fight she will have to put up to live when she is born. We appreciate all of the good thoughts and prayers. Our family and our new daughter need all the positive thoughts we can get.

I will try to keep you posted on what is going on . We need to get our plan for our move outlined and figure out when it will all happen. We also need to head up to Omaha for an appointment and meeting with the doctors there. I hope to have that scheduled tomorrow through our doctor’s office.